Acceptance Archive

39

Nature Of MS

MS time is running out

I’ve been so involved with my struggle with this disease that I neglected to realize how it might be impacting my family or how my increasing disability may be emotionally influencing them.

I feel that this especially applies to my father.

Each new phase of this disease slaps him almost as hard as it whacks me.

It must be hard for my parents having to watch from the sidelines. To see their child, no matter how old, go through a difficult challenge. My parents live about an hour away from me. I wonder sometimes if I tell them too much. I do occasionally review with them the things I intend on writing about. I do this because I don’t want anything to come as a surprise to them.

They witnessed firsthand my difficulty feeding myself. They see my husband helping me in the restroom. During weekend visits to my parents’ home, my mom often physically helps me get into the bed. She even sleeps close to my bedroom at night, in case I may need something. She tends to do what needs to be done in all situations.

I have to assure my dad a little bit more.

I realized this when I found out he asked my mom, “Is Nicole dying?”

My mother calmly responded with the truth, “She’s not dying. She’s just getting worse”.

I forget how I must look to other people who do not know the nature of multiple sclerosis.

22

My MS Odds

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Content provided by: Tammy Mahan of Healthline

Who Gets MS
There are almost two and a half million people worldwide estimated to be affected by MS. MS (multiple sclerosis) is not contagious, or inherited although there are a number of factors that determine a person’s risk for the disease. Factors for developing MS include:
•Ethnic background
•Geography
•Age
•Genetics
•Gender

What is MS?
MS (multiple sclerosis) is a disease affecting the spinal cord and brain that leads to a loss of balance, vision, muscle control, and sensation. A person’s own immune system causes damage to the nerves of the spinal cord and brain, which make up the central nervous system, when MS is present. It is an autoimmune disease meaning that it mistakenly attacks normal tissues in the body.

MS Patterns
There are two to three times more women with MS than men, leading to research about the hormone association to MS. Genetics has a role in who develops the disease but it is not inherited directly. There is a one in seven hundred and fifty chance of the general population developing MS; anyone with a close relative suffering from the disease has an increased risk of one in forty. The risk could increase in people that have a number of people in the family diagnosed with MS. The risk of identical twins developing MS is only one fourth, despite the fact they have the same genetic makeup, which means there are a few genetic factors involved.

When does MS appear?
•The ages of twenty to fifty are when most people get the diagnosis of MS.
•MS can be present in teens and young children.
•Scientists are trying to determine why those that are diagnosed with MS after the age of fifty progress faster with the ability to walk being affected.
•MS is less common close to the equator that it is at northern latitudes farther from the equator. There is research being conducted into whether vitamin D provides protection against the disease.
•MS is more common in Caucasians of northern European descent, although it occurs in most of the ethnic groups.
•There are variations occurring in geographic areas that have the same climate, which indicates a complex interaction among the factors such as ethnicity and geography.

Is MS increasing?
There is no evidence being found by epidemiologists to suggest that MS instances are increasing even though the number of people being diagnosed is higher than it was in the past. Improved medical care, increases awareness of MS and being able to more effectively diagnose the disease are the likely explanations for increased diagnosis of MS. The likelihood that physicians will communicate the diagnosis of MS to patients has increased as treatments that are more effective have become available.

Understanding MS Clusters
The perception that there have been a large number of MS cases occurring in a specific area or over a set amount of time is what defines a MS cluster. Areas where the clusters of MS (and other diseases) occur could provide clues to the genetic or environmental risk factors that might be triggers or causes for the disease. There has not been clear evidence produced for triggering factors, causes or MS factors from various cluster studies that have been performed.

Content provided by: Tammy Mahan of Healthline

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Working Out With Multiple Sclerosis

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Content provided by: Black Health Matters

Though it might seem like exercising when you have multiple sclerosis (MS) is an oxymoron, even a small amount of physical activity can provide great benefits. In addition to being essential to overall well-being, exercise may even ease symptoms, and it could help you stay mobile longer than if you are inactive. Talk to your doctor or physical therapist before starting an exercise program because your workouts should be determined by your fitness level. If you don’t have balance problems and you’re able to ride a bike or run, you should. Here are options if you can’t hit the pavement:

Stretching. MS patients tend to lose range in motion in their limbs as muscles freeze. Stretching your arms and legs every day will help keep them moving.

Yoga. Downward facing dog and the lotus position help relax muscles and keep them flexible. Yoga is also good for maintaining balance. Tai chi’s slow, deliberate movements are another excellent choice for building muscle tone and increasing flexibility. Choose classes for people with disabilities.

Water exercises. Swimming and water aerobics are particularly good for MS patients, especially if your disease is causing increased sensitivity to temperature. And some movements that you’re unable to do out of water are possible in water, where your body is weightless.

Stationary bike. Can’t ride in the next BikeMS event? You can make use of a stationary bike. One study showed stationary bike participants reported improvement in their fatigue symptoms.
Resistance bands. Use resistance bands to duplicate exercises normally performed with barbells. Bands can also be used to assist with stretching.

Though multiple sclerosis may mean a change in physical activity and mobility, it doesn’t mean your life has to stall. If you can no longer continue activities you used to enjoy, talk to your doctor about new ways to stay active or about ways to make your old favorite activities more accessible.

Content provided by: Black Health Matters

22

Wonder Woman

Wonder Women

This week I am completely energized to keep moving forward.

Last week after a personal ferocious crying storm, brought on by this journey with multiple sclerosis, I eventually made my way to my laptop and …wrote about it. It was my way of trying to move beyond the hurt, getting pass the suffocating isolation and unimaginable fatigue.

Tommy, my husband, on the other hand, uncharacteristically suggested an increase in my anti-depressant. After visiting both my psychiatrist and social worker they agreed upon adding another medication to the impressive list I already drag around. So I’m now supposedly transiently taking not only Lexapro but also Cymbalta. I know I have to give it a few days, but so far things are going fine. No scary side effects and no crying either!

It doesn’t stop there. I have to do my part too. I have to engage in life by participating in as much as I can. Exactly the kind of things you run from when depressed. When I was busy crying I was focused on the things I could no longer do. I just wanted to hide in bed and shut every one out. This is what I got instead.

Long time friends from both high school and college dropped by. We talked about old times and new ones too. Another friend even gave Tommy a break by bringing me to a doctor’s appointment. She was new to my scooter, but graciously learned how to assemble and break it down to fit in her car. She stayed the afternoon; we ran errands and ate dinner at a local restaurant. Tommy even called me thirty minutes into our excursion to make sure I was okay. How cute! In fact for once I was able to bring dinner home for him.

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The point is I opened the door and allowed friends to see me for who I am now, regardless of what I could do the last time they saw me.

Little did I know my latest friend is an actual photographer. She showed up and we had a real photo shoot for Halloween. She even brought over the lights and costume too!

86

Clinging To Sanity

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I’m not clear what happened differently this week. I don’t have any new symptoms. Everything I can’t do, I haven’t been able to do in years at this point. My husband is still doing a good job taking care of me. We have not even been arguing. I’ve been seeing my same psychiatrist and I’ve really been doing my part to cling to my sanity.

But yesterday, I completely lost it. I cried endlessly all day long! I hate crying. I especially hate doing it in front of my husband. Because, I know there’s really nothing he can do and men always want to “fix” the problem. The thing is I don’t think there is a way to fix me.

Since nothing has changed, I am fiddling with the idea of increasing my depression medication. You know depression is really a side effect of multiple sclerosis. But of course it would be.

It’s so bad that I actually left a recent MS self-help meeting feeling worse, because I was the most disable one there. Meaning, although they all had valid complaints, at least they could get up and walk out. I had the nerve to judge them and that made me feel horrible.

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It seems as if once again I’m assuming that if you can walk you must be happy. From down here in my wheelchair it seems that has to be true. Right?

So I’m going to see my psychiatrist next week. Hopefully, it will be as simple as him writing a new prescription.

Hopefully.

19

Enduring Hardship

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We are not all amazing stories waiting to be told; we are more like amazing lives ready to be lived. -Unknown

MS can transform you into someone you barely recognize. I for one refuse to let that materialize. Sometimes MS wins but I cannot let it totally defeat me. I will relentlessly attack with vigor and die fighting with my boots on, in my continuous campaign against MS. No matter the score I will fight MS one battle at a time. MS is like a storm cloud hanging over my life. It has me soaked in pain but I’m still here. I’m still fighting.

Don’t get me wrong; it has altered my dreams and routines. I can no longer walk, work or drive. All reasons to make you want to punch the wall and give up.

But I can’t. I’m too stubborn. I learned it from my mom. She’s a fighter and so am I.

Happiness is never handed to you. You have to shape it yourself; just like a potter. After having a couple of rough weeks, it dawned on me there are a few things I must continually do to maintain my level of happiness or at least contentment.

I need to make it to the gym.
I need to write to share my experiences with multiple sclerosis.
I need to read.
I need to go to the psychiatrist.

All things I remembered after a recent horseback ride. Oh, something else I enjoy. At a local non-profit farm it’s cheap and serves as physical therapy. That’s a 2 for 1!

If you look hard enough, if you want it bad enough, you can find something you CAN do too.

What is it?

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36

Small Victories

big-vs-small

Some mornings I wake up and I just can’t do it. I don’t want to battle MS anymore. But somehow I muster up the strength to fight the good fight and begin my day.

I have tremors in my hands, which makes using them exceedingly difficult. At times I’m unable to hold a fork or spoon and transferring myself in and out of my power chair is becoming more challenging due to my lack of strength and mobility in my arms and legs. Most nights I feel like someone borrowed my legs and ran a marathon.

Lately my body aches wake me up before the rest of me wants to be awake. Then I spend the rest of the day exhausted and wanting to just climb back into bed.

I can remember when I was so active. I did so many things. What happened to me? Why has MS consumed so much of my life?

It is so frustrating to have such a hard time even taking a few steps without using a walker or the wall. I feel like a wax dummy fighting a fire that is MS.

The other day after taking a nap I woke up and steadied myself to go to the restroom but my legs didn’t follow. I quickly fell straight to the floor. I gathered myself and began to crawl to my wheelchair. It took me about five minutes to situate myself in my chair and make it to the restroom. But I did it and I was so happy.

Believe it or not, nowadays I consider that a victory because no one saw me crawling on the floor and I was able to hold my business until I made it to the restroom.

I guess when life hands you hard times any positive moment, no matter how small, is welcomed. Even the small victories can be huge.

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